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ACTHomas – Symptoms, Treatment & Support

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Posted by adeel | Jul 18, 2023

What is ACTHoma?

ACTHoma is a rare form of neuroendocrine tumour that produces excess Adrenocorticotropic hormones (ACTH), a hormone that regulates cortisol levels in the body. This overproduction can lead to a condition known as Ectopic Cushing Syndrome. ACTHomas can occur in various parts of the body, but they are most commonly found in the lungs and less frequently in the pancreas or thymus.

Symptoms

The excess production of ACTH triggers the adrenal glands to produce too much cortisol, leading to Cushing syndrome. Symptoms of this condition may include:
  • Rapid weight gain, particularly around the face (creating a “moon face” appearance) and torso
  • High blood pressure
  • Skin changes such as purple stretch marks, easy bruising and slow healing of cuts and infections
  • Fatigue
  • Muscle weakness
  • Mood changes such as depression or anxiety
  • Irregular or absent menstrual periods in women

Disease Aetiology (Causes)

The exact cause of ACTHoma is currently unknown. These tumours are typically sporadic, but may also be associated with genetic conditions like Multiple Endocrine Neoplasia type 1 (MEN1).

Diagnosis

Diagnosing ACTHoma involves a combination of:
  • Blood and urine tests to measure hormone levels, particularly cortisol and ACTH
  • Imaging tests such as CT, MRI, or PET scans to locate the tumour
  • Biopsy, where a small sample of the tumour is taken for examination under a microscope

Treatment

Treatment options for ACTHoma depend on the size and location of the tumour and may include:
  • Surgery to remove the tumour, which is the primary treatment option when possible
  • Medications to control the production of ACTH and manage symptoms of Cushing syndrome
  • Radiation therapy, typically used if surgery isn’t possible or if the tumour recurs
  • Chemotherapy or targeted therapy, generally used in cases of advanced or metastatic disease

What Support can we Give for ACTHomas?

ACTHomas is a rare cancer, meaning it is not as well-known as other forms of cancer. Without a Ribbon is an Australian organisation that provides support for individuals who suffer from rare cancers. So, we provide a designated platform for Warriors to obtain information specific to their Rare Cancer. We also provide annual opportunities for our Warriors to meet and learn from each other. If you suffer from rare cancer such as ACTHomas, we can help and support you through your journey thanks to the generous donations we receive. Click the link below to sign up and become a Warrior today!

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You can help us with your donation:

Without a Ribbon is a charity that works hard to aid those who suffer from rare cancers. You can help our cause in a variety of ways:
Donations — Without a Ribbon are grateful when we receive every donation. Giving to Without a Ribbon helps us to provide ongoing support, organise the annual gathering and subsidise the costs of our Warriors attending these conferences.
Sponsorship — If you wish to sponsor our charity, please contact us using this form.
Volunteering — We are always looking for volunteers to help with different aspects of running our charity. So, if you are looking for volunteer work, please feel free to contact us.

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